Tag Archives: progesterone deficiency

It amazes me that OBs can still be resistant to testing for progesterone deficiency and treating it. After two consecutive losses and a clean blood panel, I begged my OB to test my progesterone levels. I was pregnant again. Not only did she refuse to test, but she also said that even if I tested low for progesterone, she wouldn’t supplement. Her “brilliant” idea to treat pregnancy loss was Clomid! (You can read tons of stories about women taking Clomid and suffering miscarriages as well as being blessed and challenged with multiple gestation issues.)

I lost that baby at 10 weeks gestation. It died a few weeks earlier. I was devastated and so angry. I’m still angry at that nutjob OB. For numerous reasons I transfered to a more compassionate OB who had been through infertility with his wife and also seemed to enjoy thoughtful discussions with his patients. Although he misdiagnosed my problem, he supported me in seeking a second opinion with a reproductive endocrinologist (RE).

The RE discovered low low low progesterone. The RE also found adenomyosis in my uterus that was distorting the shape of my uterus. He believes that my cesarean caused the adenomyosis. He removed as much as he could.

I received the all clear to TTC and quickly became pregnant again. (Becoming pregnant was never my issue.) I began supplementing with progesterone via 17-hydroxyprogesterone shots. An early ultrasound discovered that I was carrying twins. (Recall the one OB’s suggestion to give me Clomid?!??!!!!!!!)

I continued the progesterone injections and weekly progesterone tests during the first trimester of that pregnancy. My progesterone levels seemed ok on their own, but it was prudent to continue especially since specialists don’t know what a good level of progesterone is for multiple gestation. After three consecutive losses, I carried my twins to term. :)

I accidentally became pregnant during my September 23, 2010 cycle. I suspected it almost immediately after conception, so I began early testing. By CD 28 I tested positive for pregnancy. I contacted my OB’s office (my previous lovely OB died the day he cleared us to TTC in 2008) on a Friday, and was frustrated that it took until the end of the business day on Monday to get a script. In the meantime, I contacted medical friends and even the RE’s nurse. I was amazed that she got back to me and was still willing to advise me . . . 2 years later and from out of state. What a blessing.

Your typical OB isn’t always well-equipped to deal with early pregnancy issues. My OB recommended 100mg oral progesterone. I double-checked this with the RE’s nurse, and she did NOT recommend this treatment. My SIL also told me some sketchy stuff about oral progesterone supplementation. The RE’s nurse said the best thing to do is either go back on the shots or do 200mg prometrium vaginally. Since prometrium is so accessible and doesn’t require a stick in the bum, I went that route. I also want readers to know that it took a while to straighten out the script, but by Tuesday I had what I needed thanks to a lovely independent pharmacist, the RE’s nurse, and the OB’s office following through with exactly what I requested.

I just want to offer this information up for those who are struggling to make sense of their losses. Really, if you think you suffer from low progesterone and/or a short luteal phase, you need a medical script for progesterone supplementation. It is unlikely that natural supplements will do the job . . . maybe for marginal progesterone?

Someone on one of my advocacy lists said that taking prometrium vaginally seemed “iffy” to her. I must admit that irritated me, but she doesn’t know anything about me or how seriously I consider my health decisions. Had I not been directed to this reproductive endocrinologist in 2008, I would probably not have my twins or be 16 weeks pregnant with my fourth and final baby.

I’m a bit of a wreck today. I seem to get pretty antsy and stressed out before OB visits anymore. Hmm, wonder why. Anyway, I have an ultrasound scheduled tomorrow to check on my healing from the hysteroscopic myomectomy that was performed in August. The myomectomy was supposed to remove a fibroid from the uterus and uterine muscle. However, the surgeon found NOT a fibroid but an adenomyoma, endometrium growing in the muscle layer. He’s not sure how much he was able to remove.

I must admit that I’m not feeling terribly confident. I think I’m feeling less discomfort during ovulation from before, but that’s the only noticeable positive change. I had one ok period followed by a horrific one in September where I was bleeding and clotting so heavily, and of course, I was busy at a conference at that time. This last cycle only lasted 22-24 days. I started spotting on the 22nd day and started heavy flow on the 24th day. Bummer. My progesterone must really suck.

I suppose the two possible outcomes for tomorrow are: (1) things look healed, so go for it, or (2) things don’t look so great. I wonder how distorted my uterus still is? I wonder if the myoma really had anything to do with my losses? If things don’t look great, will that mean another surgery? Or will it just mean more agonizing waiting?

And then what? I can’t hardly remember any more. I think I’m supposed to start on antibiotics and low-dose aspirin the cycle before conception. Then I’ll have HCG shots during my luteal phase and progesterone shots once I get a ++. My husband and I are both itching for another baby. It’s crazy, really. However, we don’t feel like our family is “done.”

I started writing up a big post about the more recent developments in my journey through recurrent pregnancy loss. I still need to finish it up, but in the meantime, he’s a quick update:

In August I had a hysteroscopic myomectomy done in Denver. The idea was to hopefully remove a fibroid that was bulging into my uterus. Instead of a fibroid, the surgeon found an adenomyoma located directly above my cesarean scar. I have to review my records from my 1 successful pregnancy to determine whether or not the fibroid that was present during that pregnancy changed into this adenomyoma. Otherwise, it is likely a lovely by-product of the 2004 cesarean section that was performed on me and my daughter.

I have a substantial progesterone deficiency. Progesterone levels should not drop below 8-10 in 2nd luteal phase draw, and mine dropped to 3. I will have to have HCG shots during the luteal phase and progesterone shots during the first trimester to support the corpus luteum and developing baby. It makes me INSANE that the last OB I asked to test my progesterone outright refused. I lost that baby, obviously.

I have to wait until November to have an ultrasound performed to let me know if my uterus and endometrium have repaired from the surgery. Then we can talk about ttc.

It’s hard to believe that it’s nearly a year since my first loss and only 4-1/2 months since my last loss. But I am starting to put the pieces together. Here’s the list of causes my Reproductive Endocrinologist outlined for me at my early June visit as well as my status in each of these areas. I hope this may help others who have experienced multiple losses advocate for the help they need.

INFECTION
Yeah, it really stinks to think that I could have lost babies due to low-grade infection, but it is possible. The RE recommends that I do a round of antibiotics during early pregnancy.

IMMUNOLOGICAL PROBLEMS
This category refers to things like clotting disorders, immuno-deficiency illnesses, and the like that can and do contribute to primary and secondary infertility. When clear immunological problems are not identified through extensive blood testing, doctors seem to recommend taking a baby aspirin (81 mg) a day as a possible protective measure. My bloodwork came back just fine and dandy!

STRUCTURAL PROBLEMS
Structural problems can be congenital or acquired. An example of a congenital structural problem is a bicornuate uterus. Some women with this uterine shape have difficulty maintaining pregnancy to term and their babies may not descend optimally (vertex, anterior-ish) into the birth canal. I had a HSG done in late April, and my OB believed that I had a congenital uterine defect. However, my follow-up (and second opinion) with the RE has not confirmed this to be the case. Rather, it appears that a relatively small (1-1/2 inch or so in diameter) fibroid is distorting the left side of my uterus. Even though it is intramural (in the muscle, not in the uterine cavity), the RE thinks it is enough of a problem to justify a laparoscopic myomectomy. I am not convinced and will hold off on this invasive procedure until all other avenues have been exhausted.

HORMONES
This is where we enter a major realm of disagreement in the medical world. Some doctors believe in progesterone deficiency and luteal phase defect; others don’t. Some of the doctors who don’t will still agree to supplement since conventional wisdom suggests that supplementing progesterone production isn’t dangerous. As luck would have it and non-traditional practitioners have told me time and time again, I have a progesterone deficiency. A fairly marked deficiency, actually. I had my progesterone levels checked twice during my last cycle – the first level was 20 (good); the second level taken only 48 hours later was 3 (NOT good).

LUCK OF THE DRAW
The fact remains that not all pregnancies are viable. All children are a blessing, but not all babies – in utero – are meant for this world. I do take some comfort in knowing that if any of these babies were just not going to be healthy, that they were not put on this earth. I’ve had friends and family members choose to terminate pregnancies in the 2nd trimester, and I am thankful that I have never been given that choice. On the other hand, knowing that my body is not producing enough progesterone to sustain pregnancy makes me sad and incredibly angry.

I am sure that the sadness is quite apparent if you’ve read anything on my blog this past year. The sadness and loss has been overwhelming at times. I am quite certain that my baby boy has been trying so hard this past year to come home to me, so it’s been particularly trying and emotional.

Why am I angry? First, it is extremely frustrating to have seen three practitioners who have disparate diagnoses and protocols for dealing with repeat pregnancy loss. Secondly, being refused services is infuriating. Thirdly, doctors who contradict themselves and/or make stuff up make me insane.

OB 1 doesn’t (WON’T) test hormone levels during early pregnancy. I am angry because she refused to order a simple progesterone test, and now that I know I have trouble maintaining adequate progesterone levels during the luteal phase, I resent her even more than I did before. She has contradicted herself; she has refused services; she told me I would have to schedule a repeat cesarean for future births moments after waking up from sedation following an unwanted (but needed) D&C; she didn’t ever give good justifications for her protocols; she wanted to put me on Clomid; etc. Mostly I am angry with HER.

OB 2 doesn’t believe in luteal phase defect but is willing to treat with progesterone supplementation. My beef with this doctor is that he made up a term on my HSG report – partially-didelphic uterus. It doesn’t exist. OB 2 is great in that he’s willing to collaborate with specialists and takes the time to explain the evidence underlying various protocols. I also appreciate that he is cautious when it comes to reproductive surgery. He told me that I shouldn’t consider a myomectomy at this time – isn’t one uterine scar enough?

RE 1 I appreciate because he has been very thorough. Perhaps there has been some overkill, but at this point, more information is good. I am glad that we can (for the most part) rule out acquired or inherited thrombophilia, for instance. I wish he hadn’t been so quick to suggest surgery for my fibroid. I wish he hadn’t invalidated my concern for what this myomectomy would mean for my reproductive future. Sure it may improve my fertility (possibly), but it would certainly necessitate cesarean deliveries from here on out. I got the feeling that since my uterus is already scarred, that he assumed additional scars were negligible concerns. He wasn’t listening. Additionally, my last conversation with the RE’s nurse was confusing – I almost wonder if he has me confused with another patient? Or perhaps he consulted with other doctors in his group regarding my file and has revised his protocol. It would be nice to know for certain.

I will likely seek another opinion from a RE since I am in a big city this summer. Recommendations for surgery really need to be followed up on with additional unrelated practitioners. You’d get a second opinion if a doctor recommended back surgery, right?

I had a follow-up appointment yesterday with the OB who performed the needed curretage a few weeks ago. I can’t say that I really learned anything helpful from the meeting.

Pathology on the baby came back normal though apparently no chromosomal analysis was done. I hadn’t realized that the pathology would only rule out ectopic or molar pregnancies. I already knew from the ultrasound that neither of those were concerns. So that was a costly dead end.

Chromosomal abnormalities? Perhaps, so she recommends testing for both me and my husband. I assume that we will go ahead and do that.

Progesterone deficiency? Perhaps, so she recommends taking Clomid when I’m ready to conceive again. I was not previously aware of using Clomid to treat potential progesterone deficiency or apparent “luteal phase defect.” Since I ovulate on our around the 15th cycle day, I don’t think LPD is my issue. However, I’m not ruling out some sort of hormone imbalance. When I’ve had HCG levels tested, those numbers have been just fine. But I’ve never had my progesterone level checked, and this OB wouldn’t do it anyway even after Clomid treatment. I find that odd. What if the Clomid wasn’t quite enough to sustain the corpus luteum until the placenta takes over? Wouldn’t it make sense that I could still possibly need progesterone supplementation even after conceiving on Clomid. (Remember that I have no conception problems; I’m just “failing” to sustain pregnancy right now.)

Immunological problems? Not suspected though I am inclined to disagree. I have a history of endometriosis, depression, low energy, and adult onset acne, for instance. My mother has rheumatoid arthritis which is an auto-immune disease. I rarely feel particularly “great,” but then again, given what I’ve been through this past year it would be hard to identify a great day even if it was right under my nose. I found the Reproductive Immunology Associates’ information on miscarriage prevention to be interesting, encouraging, disheartening, and overwhelming. I will pursue some of these ideas with local care providers.

Next month I will follow-up with another OB in town. I may also go see an endocrinologist who has been recommended. There are evidently fertility specialists as near as Spokane, so perhaps I should be contacting them? I have so many questions, and I don’t know if I’ll ever find answers. That’s perhaps the scariest part. At this moment I think I could deal with being told that trying to conceive again would not likely be successful for X, Y, or Z reasons. We do have one incredible child, and I might be inclined to consider adopting from abroad. But to have to deal with the unknown is what really worries me. Three miscarriages in a row “just” bad luck? How will I overcome that “diagnosis” if it is the most likely deduction?

Time will tell. Each day is different. Some days are ok and some are not. I am living moment to moment, hour to hour, day to day. Planning ahead for anything is excrutiating. But “ahead” will come whether I like it or not, whether I can deal with it right now or not, and whether I can deal with it then or not.

Because I get so many hits on my site from others who are struggling with miscarriage, I feel compelled to continue blogging about my journey. I have suffered back-to-back miscarriages this year, a spontaneous miscarriage on August 1 followed by a subchorionic hematoma on October 7 that terminated my pregnancy by October 15. My DH and I decided to take a break from trying to conceive until we could perhaps discover a reason for the repeat back-to-back miscarriages. I am now at a point where 66% of my pregnancies (2 of 3) have failed. I am now considered high-risk for future miscarriage by my care providers. Some care-providers don’t even sneeze at 2 miscarriages, but I’m glad that mine have been proactive even if they don’t agree on the causes and potential remedies for my problems.

On Thursday I had an herbal consultation with a direct-entry midwife (DEM). She may become my midwife in the future, but for now we’re working to get my body back on track. She suspects that dysfunction in one or more of my regulatory systems is preventing me from sustaining my pregnancies. The systems/organs that seem to be out of whack include endocrine, thyroid, liver, and adrenal. This lines up with the feedback I get from my chiropractor every week. She has recommended an herbal tincture comprised of vitex, auralia berry, black cohosh, and a couple of other things. I should stay on this treatment for three months before becoming pregnant. Then the tincture would need to be adjusted as some of the herbs are not recommended for pregnancy.

On Friday I finally had my follow-up appointment with the OB who managed my miscarriage. She is not the careprovider with whom I planned to establish, but at this point, I’d rather continue care with her should I need assistance from a medical provider. She’s a nice gal and very supportive of natural childbirth. She helped my friend deliver her baby vaginally during a placental abruption. Anyway, she recommended some blood tests (antibody and anticoagulant) and consented to testing my thyroid as well. She doesn’t believe I have a luteal phase defect even though my last cycle was only 26-days long and I bled in the middle of the cycle. (I bled during ovulation when I got pregnant this last time too. The herbalist thinks I may have a progesterone deficiency.) Instead of doing progesterone tests, she would recommend an edometrial biopsy. Eeek! I really haven’t been satisfied with the information I’ve found on the internet. I’ll probably consent to one if I have another miscarriage, but I think I’ll give these herbs some time to work. The OB does not recommend chromosomal testing at this time. If anything conclusive arises from the blood tests, I will post the information here.

That’s it in a nutshell. The holidays are tough – I have a number of friends who are pregnant or have just had new babies. I expected to have a cute pregnant belly about now. I never would have thought I’d be grieving two lost babies this Christmas. I do have plenty to be thankful for – my amazing husband and lovely little girl, a good job, a loving family, wonderful friends, empowering and humbling advocacy work through ICAN, and a good life.

After doing some research I am more conflicted about the causes of past and likelihood of future miscarriages.

I’ve read Lesley Regan’s book, Miscarriage, which was recommended to me and haven’t been comforted by it in the slightest. The most helpful information is contained in part 3, a section of FAQs. By the time I reached that section I was “over” the book. Part 2, “Understanding the Causes”, does not live up to its title. I certainly don’t understand the cause(s) of my miscarriages from reading this book. I don’t know if I’m a sporadic or recurrent miscarrier or what if anything can be done to assist me. I don’t know what kinds of tests might be offered to me or other tests that a regular OB with limited experience in reproductive endocrinology might not know to request. Furthermore, the book is out of date having been published in 1997.

Regan does not believe that low progesterone is the cause of miscarriage but rather a symptom. “The die is cast.” (129) Ick. Low progesterone means that there’s something wrong with the eggs that are released or the corpus luteum. Ok, so follow up with something helpful like . . . “so instead of progesterone therapy, it is recommended that . . .” For women with a history of recurrent miscarriage, luteal phase defect is a common cause. However, no follow-up information for non-IVF “patients” is presented.

And it’s not like the “experts” agree. For instance, there’s this article about preventing miscarriage. The title, Miscarriages can be Prevented, is a tad ludicrous. Maybe some can be prevented, though I’m not even sure. But for what it’s worth, this site claims 5 main reasons for miscarriage.

Cause

Percent

Infection

1%

Anatomy abnormal

5-10%

Progesterone level low

20%

Chromosome abnormal

Primary miscarrier (no live births)

7%

Secondary miscarrier (one or more live births)

50%

Immune mechanisms

50%

Unknown

15%

This information strongly contrasts with Regan’s book and with information posted at this infertility blog that I stumbled upon. This NY-based doctor has been in the infertility business for 15 years.

Regarding luteal phase defect, he states:

In general, most reproductive endocrinologists do not believe in the luteal phase defect [though Regan does] and do not test for it. In the old days, doctors would use progesterone clomid or FSH to treat the supposed defect, and today women are getting on those meds more quickly than before. And it takes time; months and months can go by while you’re waiting to see if the progesterone is working. In most cases you don’t have the time to waste.

I realize there are some of you who were diagnosed with luteal phase defect and were given progesterone with great success. I am very happy for you, but your success is the exception, not the rule.

So like Regan, he believes that weak progesterone signifies an ill-fated pregnancy. Very few women actually have LPD or do recurrent miscarriers have LPD/hormonal issues? So very few women will benefit from progesterone therapy? Though the chart above indicates that a substantial rate of miscarriage happens because of low progesterone. Chicken and egg??

From what I can tell, direct entry midwives (DEMs) turn to progesterone supplementation for women like me. In fact, a DEM I know suspects that I have a progesterone deficiency. Perhaps this is why I needed progesterone to stop my irregular periods that were caused by the Nuvaring falling out (unbenownst to me) this past March. Perhaps this is why I lost my summer pregnancy. Maybe this is why I spotted in my first post-miscarriage cycle around ovulation time. Maybe that’s why I lost my fall pregnancy. Perhaps this is why I spotted again in the middle of this cycle – the first one following my recent miscarriage.

I came across a forum at Ovusoft that contained an informative thread regarding progesterone. I also post from time to time at Misdiagnosed Miscarriage and recommend that site to anyone who is experiencing or has experienced a pregnancy loss. I plan to check out these links at a low progesterone site I found via Misdiagnosed Miscarriage.